To understand the barriers that are preventing your company from achieving patient-centricity, it is important to first define the concept. Although it has become the industry’s catch-phrase, it is unlikely that all players are on the same page as to what it actually means to be patient centric.

“Patient centricity” is officially defined as the process of designing a service or solution around the patient. Stemming from the UK’s NHS-driven thinking like “no decision about me, without me,” the idea seems easy to grasp, but as an aim for pharma companies it is all too often overlooked despite the fact that companies often express their desire to be patient centric organizations; e.g. “inspired by patients, driven by science” (UCB); “science and patients…the heart of everything we do” (AstraZeneca); or being “a global integrated healthcare leader focused on patients’ needs” (Sanofi).

But what does it mean to be patient-centric?

When you get to the point when you can’t do anything without getting a discussion with patients, that’s when you’ve embraced the concept, for example, you can’t write a protocol without getting patients’ input.

“A lot of people are under the false impression that to be patient centric you have to [spend] every minute of every day thinking about patients,” said Lode Dewulf, Chief Patient Affairs Officer, UCB. “The truth is we’re trying to find value points in a process – whether it’s writing a protocol, whether it’s designing a marketing campaign –where you really should get patient insight, input, and connection.”

A pharma organization should therefore become a “listening ear,” engaged in a dialogue with patients. “[When you get to the point] when you can’t do anything without getting a discussion with patients, that’s when you’ve embraced the concept, for example, you can’t write a protocol without getting patients’ input. When you listen to what they think, and take away the core messages, that’s when you’ve made great progress,” Dewulf added.

Limitations

I think this is super-important. We can't turn the whole organization around and solely listen to one stakeholder. Patients must play a major role, but not the sole role. We have to make sure we are meeting the needs of all stakeholders, otherwise our medicines will not reach our patients".

While essential for pharma to stay relevant, patient engagement has some limitations. Although patient voice has become important in recent years, it would be ludicrous to expect patients to run the show. Patients, while currently given more weight than they used to enjoy, remain just one piece of the complex healthcare puzzle.

"I think this is super-important. We can't turn the whole organization around and solely listen to one stakeholder. Patients must play a major role, but not the sole role. We have to make sure we are meeting the needs of all stakeholders, otherwise our medicines will not reach our patients. There will be situations where we have to make trade-offs and where we may not be able to offer an immediate benefit to patients,” said Tony Hoos, Medicines4Patients Consulting, former SVP, Office of the Chief Medical Officer, GlaxoSmithKline.

What’s stopping your company?

[People] who have been in medical affairs, have been preaching for the last two decades that you can’t talk to patients, which is an oversimplification of the message that you can’t promote to patients".

Thirty-one percent of eyeforpharma poll participants identified lack of resources as the biggest barrier to moving toward patient-centricity in their company. Interestingly, however, only 18% of respondents named finances as the key obstacle, suggesting that money is not at stake here, but perhaps mindset shift remains a challenge.

“[People] who have been in medical affairs have been preaching for the last two decades that you can’t talk to patients, which is an oversimplification of the message that you can’t promote to patients,” Dewulf said, pointing out that many people have been “raised and trained” like that, leaving them with a strongly engrained conviction that talking to patients is wrong.

“As an industry, we often hide behind regulatory requirements. We love to control everything from alpha to omega on what we do, and when you start working with patients, you have to let go a bit of the control, otherwise it doesn’t work.”

Another part of the problem is with scientists and doctors, who consider patient input “subjective and non-reproducible,” which, in their eyes, makes it something to be ignored.

Finally, there are difficulties associated with management support. An organization can’t get anywhere without championing from the top, and encouraging all the departments to get on board.

Patient centricity seems to be the holy grail of modern pharma, and many cultural barriers need to be overcome before it can be fully embraced.

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